Autism Spectrum Disorder: Luke and Esmeralda’s Story

Published on

When Luke turned 2, his family observed that he stopped using words that he previously spoke. Due to his speech delay, he received speech therapy at Children's Hospital of Philadelphia (CHOP). After these initial sessions over the course of about three months, he showed minor improvements. “He always worked hard and tried his best,” says his mother, Kathy, “but it seemed sign language, not verbal communication, was helping him convey his needs.”

At age 3, his services were transferred to the family’s New Jersey school district to receive therapy through their pre-K program. However, following a short stint of in-person schooling, the COVID-19 pandemic arrived, and everything switched to being virtual. “Luke was not able to sit in front of a computer to participate in class or for his therapies,” Kathy explains. As a result, between ages 3 and 4, Luke’s schooling was extremely limited.

Since his speech improvements were limited, Luke was referred to CHOP’s Division of Developmental and Behavioral Pediatrics. At a visit in August 2021, Luke was diagnosed with autism spectrum disorder.

Meanwhile, Luke became a big brother to his sister Esmeralda, who also stopped using words shortly before her second birthday. “Pretty much the moment she stopped talking, it was an immediate concern, since Luke had been diagnosed,” Kathy says. Esmeralda was diagnosed at CHOP with autism spectrum disorder as well.

“Our family’s journey is unique, as Luke and Esmeralda are the first children in our families to be diagnosed on the spectrum,” Kathy explains. The family appreciates how the providers at CHOP, including developmental pediatrics with Emily Shabason, MD, helped them navigate the available therapies and services for children on the spectrum, including PerformCare, an organization that manages behavioral health care services in New Jersey. “This opened the door to being introduced to numerous agencies, providers and organizations that have provided unique and excellent services that support the needs of our children.” These include SPAN, an advocacy group; Mom2Mom, for child education advocacy resources; New Jersey Early Intervention, for speech and occupational therapy services; Circle Care Services, for applied behavior analysis therapy; Sesame Place, which offers sensory-sensitive accommodations at their facility; Adventure Aquarium in Camden, which offers sensory-sensitive events on a regular basis; the YMCA of East Brunswick, for inclusion summer camp programs; and Little Dolphins Swim Academy, for inclusion swim classes. “Throughout this whole process,” Kathy adds, “we’ve also been supported by our pediatrician, Dr. Halvorsen, with Delaware Valley Pediatrics.”

This network of support affirms the notion that “it takes a village,” and Kathy continues, “We are grateful to have such a positive community in New Jersey where we raise our children, especially with inclusion experiences. Our journey is just starting, but we are optimistic that both Luke and Esmeralda will live to their full potential and will always know they have a loving and supportive village cheering for them.”

Luke, now 5, loves dinosaurs, puzzles, books, cars, playing tag and watching movies. Esmeralda, 2, knows her alphabet, colors and counts to 20; she also communicates with single words, in English, Spanish, and some sign language. Their 8-year-old sister, Mercedes, is their biggest champion and cheerleader, and is always proud of her siblings. Luke and Esmeralda both receive applied behavior analysis therapy at school and daycare, and they receive physical and occupational therapy at CHOP’s Specialty Care location in Princeton at Plainsboro. “CHOP has been very supportive of Luke’s and Esmeralda’s needs,” says Kathy. “The doctors are passionate about the care they provide.”